There is no known cure for ALS, and once a person is diagnosed, they usually live between 1.5 to 3 years.

Over the past few months, Dudley has been speaking with Tom Hall about living with ALS. In this conversation, they’re joined by Lora Clawson, a nurse-practitioner who works with Dudley at Johns Hopkins’s ALS Clinic. She’s also an assistant professor of neurology at the Johns Hopkins School of Medicine.

Dudley says he’s been feeling sadder recently. “I think it’s probably in relation to the physical changes, as if my body was sad. Independent of the way my mind feels, or my heart feels, it’s as if the disease and the body have a set of feelings of it’s own.”

Lora talks about how she helps terminally ill deal with saddness–and even depression. “We have frank, open, untimed conversations to talk about feelings, and to really try to determine the nature of the depression, and whether it’s short-term or long-term. Are there good things? Does he look forward to things when he wakes up in the morning? Does he have plans of things that he perhaps has not been able to do, to see friends or go places? We try to help muster the energy to accomplish those things that are important.”

Lora also talks about how she discusses the notion of a good death with terminally ill patients. “We start out with discussions of advance directives. Have they thought about their life, and how their life might end? We also talk about what their perceptions or misconceptions are of interventions such as feeding tubes, BiPAP, non-invasive ventilation, as well as trechotomoy and long-term ventilation….we try to de-mystify what would be a good death, and how they’d like it orchestrated.”

You can listen to all of our conversations with Dudley Clendinen at this link.